The UK benefit reforms that are causing such trouble are driven by a biopsychosocial approach to disability, so as well as affecting CFS patients seriously, they're also reflective of the particular problems CFS patients have faced (particularly in the UK) over the last two decades.

i havent followed all this, but i myself have raised soem Freedom of information requests but had problems getting the right information.
It folowed a letter from a director of the DWP to my MP in which she answered a question about my case, saying that i had been described as "Unshaven" (i have a beard) and "Unkempt" (which i am not) in my ATOS medical report under Abnormalities, because they were taken from an approved list. This was her defence for the slurs, which i consider untrue and unreasonable statements about me.
So, i asked for the lists.
I was given their medical handbook, which i was told contained them. It did not.
I was then given a website link, and told they were there. They were not.
I asked yet again, asking the director to ensure that the department supplying the data understood exactly which descriptors she meant, as the department supplying data kept refering to Support Group descriptors, which are something totally unrelated, which most people will have heard of before.
I then got the same information again, which was still wrong.

About a month ago i wrote to my MP, who has been very helpful throughout my case, and asked if he could get to the bottom of it.

In my view, there is either no such list at all, and just said it hoping i would accept it and give up.
OR, there is a list but its either, a. dispicable, and they dont want to give me it. or b. they are just incompetant and cant figure out how to supply it as its likley in a computer database rather than in a document.

Either way, its another example of the difficulty in getting information that by law they are supposed to supply to us if requested. Its an absolute joke. I wont be giving up on this matter though.

These biopsychosocial reforms to the benefits system seem so completely indefensible... but it just doesn't matter. No one with any real power is demanding that they be defended, so they're just going on, screwing people over. There's no way that such a system, with so many errors and injustices, would be allowed to operate in a way which caused such hardship for those with power or money.

I was just reading some pieces on ESA by a young journalist here, and she's requested info about ATOS experiences: http://www.penny-red.com/

Maybe we should try to stay aware of who is writing about these things, and who it might be worth sending things we have dug up?

Or that could just lead to them all being sent the same piles of documents.

yeah its an absolute discrace. its all about money saving, but without the protection of any priniciples. So, because its so much cheaper to kick sick people off than it is catch benefit thiefs.
So, the only people who still get pay outs are the benefit thiefs.

But no one cares. The only people who care are those of us who are in need of the benefit and we are all so powerless already, and so ill-equiped to fight against the system.

Ive learnt to hate my country over this. I see union jacks flying and i just feel like its nothing to do with me - i dont feel like a British citizen anymore.

I know what you mean. It does feel really socially isolating to be treated like this.

It's also weird to be in this situation of knowing that one could lie to be treated fairly, and that being honest will lead to such protracted mistreatment.

I think that I have the resources available to be able to survive a year of poverty, but for those without, I can no longer condemn anyone who does decide to lie to the benefits agencies. It's difficult to know what moral limits there should be to behaviour when one is operating within such an immoral system.

I've previously defended the current government against what I saw as partisan attacks that failed to acknowledge that govts of all hues initiated and/or continued these welfare reforms. Others have argued that the current govt has gone further. I saw no evidence for this although in the current climate there was no evidence that they were rowing back either.

I'm now in the process of being migrated from IB to ESA and with a decades long unbroken NICS record I'll be transferred to contributions based ESA if 'lucky' enough to be placed in the work related activity group. I now find that this will last for 12 months only and afterwards I'll be moved to the means tested ESA. As I have savings and a public sector ill health pension I obviously wont qualify for this benefit. I now find that not only will I lose the cash benefit (the £120 per month I can manage without) but also any future NICS contributions and I won't be counted in government statistics as unable to work due to illness. None of this requires any change in my health or any reassessment of the state of my health.

I could theoretically apply for JSA (if in the UK) knowing full well that I couldn't take up any job offer but this is also means tested after 6 months so I wouldn't be counted as claiming JSA either.

This may be an attack of 'nimbyism' on my part but I'm offended for a number of reasons :

The welfare state was supposed to be founded on the reciprocal arrangement that you contributed via tax and national insurance contributions when able and received support when unable (you know, just like insurance but on a national level). I don't recall the government refusing my tax and national insurance contributions because they were a 'bit flush' at the time or offering to refund them now if they refuse me benefits;

It appears to send contradictory messages about the rewards of working and thrift - both traditional Conservative values I would have thought. Not only has thrift been punished by artifically holding down interest rates to inflate public and private debt out of existence, but thrift will also now result in you being 'on your own mate' if work is no longer possible. I accept the argument that support should be given to those that need it but I was kind of hoping that some of my savings would survive to help us during retirement proper in 18 years time. Which we will probably need with no future national insurance contributions and who knows if the state retirement pension will be means tested in the future?;

Which leads me to the inconsistency of means testing of benefits which appears to be solely related to the degree of political flack politicians fear might come their way. Non means tested DLA can be claimed whether you are in work, out of work or a multi-millionaire. I've no gripe with anyone claiming DLA but can't see why one health related benefit is means tested and the other not. Don't be surprised though if the DLA replacement goes the same means tested route as its clear that the great unwashed public have no sympathy for the sick unless directly affected.

Which brings me to the furore and backpedalling when it was suggested that wealthy households should lose child benefit which now, as amended, only applies if one partner earns over £50,000 but allows a combined household income of £98,000 pa before penalty. What level of savings does this income equate to and why has a policy intended as a temporary post war measure become a 'human right'? I never minded contributing my share to help those genuinely in need but why should I pay taxes from my sub-minimum wage income to pay for their iPads, trainers and M&S ready meals? Well, because of the political backlash that would result from those who see themselves as the hard working and 'squeezed' middle. The genuinely ill have no such political clout;

Personal considerations aside though, what concerns me most is that people like me are about to be airbrushed out of existence. Chronic illness doesn't appear to figure in the new lexicon nor will the chronically ill feature in official statistics (if they're not on our books we don't need to count them). It seems you can be fully fit and able to work (or at least giving that appearance for fear of the alternative) or so ill and unable to work that to suggest otherwise might attract legal action. Otherwise illness only exists as a temporarily condition and everyone can be 'rehabilitated' back to productivity through a combination of threats, financial sanctions and public opprobrium.

In some ways I'm actually quite relieved as in future I'll be able to enjoy those rare shopping trips or even a meal out (very rare) without feeling that I and everyone else thinks I'm 'swinging the lead'.

Sorry Esther for hi-jacking the thread and sorry for the rant - just venting a little.

I actually agree with you that a lot of the blame for the current problems belongs to the last Labour government. These are left wing reforms, being driven by a left-wing ideology. The Conservatives just support them because they're a good way to cut spending, and they've never had any real interest in helping those in positions of hardship!

This is the way those with health problems are now seen: 'unproductive'. There's no real concern about the diminished opportunities and capacity that many face, or willingness to promote their personal autonomy or freedom, just a desire to make them less of a burden to those with power and authority. And they know we're too weak to fight back.

The recent media spin, as if the quality of life of those with serious health problem is just too darn high, is all so laughable.

Anyway, I expect that talking in this way is probably unhelpful. We need to be able to keep our heads down, and work within the current social assumptions that are being imposed upon us, regardless of how unjust they are. Otherwise we'll just seem ever more radicalised and unreasonable.

I actually agree with you that a lot of the blame for the current problems belongs to the last Labour government. These are left wing reforms, being driven by a left-wing ideology.

Click to expand...

Sorry, but I see nothing of traditional 'left wing' philosophy in these policies, or in the Blair/Brown governments in general. Though I certainly agree they played a major part in getting this whole nightmare rolling.

We here in Australia look like we are going to get a government similar to the UK Cameron one at our next election. Except probably worse.

I guess they can be seen as either authoritarian left or authoritarian right... but given the paternalistic sheen that there is to them, and that they were largely brought in by the Labour party, I think that it's fair to view them as part of the Left's failure to understand the limits of the state.

I suppose that it's a rather pointless distinction, when those in power are so affected by the interests of capital, and I think of myself as increasingly left-wing... but I still see these reforms as a reminder of the dangers of a certain type of left-wing politics.